The Reality of Severe ME
This is the reality of severe ME.
The past week I've been having large episodes of unbearable nausea. I have been keeping my room pitch black to accommodate it and have been only able to turn on a low light intermittently from around 6 pm to 10 pm during which time I eat, take medications, and cuddle with my partner.
Let's talk about Instagram and chronic illness. The reason I mainly post infographics is that my life with myalgic encephalomyelitis is not very photogenic. I often prioritize getting information out in a cute and concise form over showing my reality.
So much of the reality of persons with severe ME and very severe ME is hard to look at. It's hard to acknowledge that our lives are at a level of difficulty such that 1 in 7 commit suicide. It's hard to acknowledge the level of neglect that so many faces.
I have noticed many of the prominent MECFS Instagrammers I follow are moderate or mild. This allows them to do much more in terms of both advocacy and in terms of content creation. Society prefers to see ingenious solutions for getting out to the beach or into nature than it does people for whom no level of ingenuity can facilitate leaving the bed. And of course, mild ME is a severe Illness that still tugs on people's empathy and is rightfully seen as a major challenge in life.
However, it is important to remember that for every person with mild ME, there is another with severe. (Both make up 25% of the patient population) That those who can with great difficulty work are in fact the lucky minority. Remembering this reminds us that while "learning to embrace life with chronic illness" is an important message "we need to fund research and treatment into this deadly and life-ruining illness" is even more so.
Yes, learning to accept your illness is important. But there are many of us who live with a level of chronic pain and disability that no mindset can make tolerable. We live to stay alive. To hold onto the hope that someday our bodies may be healed enough for us to have a life we can embrace. Please don't tell us to embrace this life. We are already fighting to endure it. Instead, help us. Help us be seen. Help us be cared for. Help us be cured.
